How do I help a Loved One Suffering from a Chronic Illness?

The link between physical health and psychological well-being is well established in research. The World Health Organization(WHO) (1948) defines health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” What this means is that physical wellbeing is incomplete without mental wellbeing and that the treatment of a physical illness cannot be limited to the treatment of physical symptoms alone. This is especially true in the case of chronic illnesses, wherein, a complete cure is seldom possible. Treatment of such illnesses involves constant monitoring, management, and regulation of a host of lifestyle-related factors on of which is psychological wellbeing. A growing body of research literature is starting to point out the role of psychological factors in development, maintenance, and progression of chronic illnesses such as diabetes, cardiovascular disease, kidney disease, psoriasis etc.

Chronic illness affects an individual’s state of mind just as much as it affects physical health. Literature also points to the fact that those who suffer from chronic illness may also be more vulnerable to experiencing psychological distress and developing common mental disorders, such as depression than the general population (Moy, 2009). Further, these signs and symptoms may go unnoticed by physical healthcare professionals who may only be concerned with the treatment of physical symptoms (Goldberg, 2010).

Chronic illness in the Indian Context

India has one of the highest prevalence of both cardiovascular diseases as well as diabetes mellitus in the world. A report published by WHO (2005), states that these illnesses are commonly found in among the urban as well as the rural population in India. As mentioned earlier, psychological wellbeing is important in tackling the aforementioned illnesses. Therefore, it would not be wise to undermine the role of psychological wellbeing in the treatment of these diseases.

Beyond physical symptoms

With the advancement in the medical technology, individuals with chronic illness, today have higher survival rates than before. However, there definitely is an emotional cost that one pays while surviving a chronic illness.

The individual diagnosed with chronic illness undergoes a sudden mental setback when first told about the illness. The prevailing emotion is that of a sense of loss. The diagnosed individual may experience a loss of a body part, social functions, roles, status in the society. Accepting this loss is not easy. The process of coping with this sudden and pervasive loss can be akin to the experience of grief. What makes this even more difficult is that this loss may not be visible to people around, as a result of which this may not consider this as a legitimate form of loss.

Psychologist James William Worden (1995) has put forth the tasks of grief that the family and the individual diagnosed, go through. Understanding these tasks can help one assist the psychological recovery of the person undergoing chronic illness. They are as follows:

Task 1: Accepting the reality of the diagnosis and resultant loss of health

Even after an individual is diagnosed with a chronic illness, the individual and the family members are seldom in the state of mind to accept it. Often they deny the reality and think that they are absolutely fine or that there has been a mistake on the doctor’s part. Acceptance is not only limited to the diagnosis. For example; one may accept the fact that they have been diagnosed with a chronic illness but may not be willing to believe that it has happened to them/ their loved ones. This can often delay the commencement of treatment, leading to further deterioration of health. It is important that one moves towards acceptance by talking openly about one’s diagnosis without hiding it. The individual diagnosed must be encouraged by their family members and friends to verbalize the shock and pain they are experiencing because it helps the news of the loss sink in better. After that, both the individual as well as their family can start to better acquaint themselves with the illness and how it impacts the body and other aspects of life. Doing this will help them better understand and manage the illness. Chalking out a plan for the future in terms of how to keep the illness from taking over one’s life, is a great way to both come to terms with the loss of health, as well as find ways to remain healthy in spite of the illness.

Task 2: To work through the pain of grief

The physical discomfort of the illness is accompanied by psychological distress. Psychological distress, can take different forms, for instance – the negative meaning the individual attaches to the illness, the fact that the illness will now prohibit their lifestyle from being how it was before the illness etc. Individuals are pushed to “be strong” and cater to the physical aspects of the illness without any additional psychological support being provided to them. However, identifying these emotions, expressing them, and then addressing them is equally important.

Task 3: To adjust to the changed reality

Both the individual diagnosed with the chronic illness and their family members have to make significant changes to their day to day lives as a result of the illness. These can be external, internal as well as spiritual in nature. For example, accepting that their close one is now ill, and cannot help the family the way they did before, thus having the family learn to do things without them and take up their roles. Rituals that the individual and family used to do together might also be impacted and the family might have to make new rituals that adjust to the individual’s needs due to the illness. Other examples are, creating one’s new identity in the absence of the person, or, adjusting the assumptions one held about the world and life in general. The good news is however, that this process eventually shapes into finding new meaning and purpose to life.

How you can help an individual with a chronic illness:

Surviving chronic illness requires inputs not only from the affected individual but also the family members. Mentioned below are some ways in which you can help improve the psychological wellbeing of a loved one affected by chronic illness;

1. Listen to the person without judging them
   Patiently listening to the person is very important. The individual facing the disease undergoes significant and ongoing distress. It is important for them to vent to their near ones. At such times, instead of arguing or judging whether it is right or wrong, just listening to the person proves to be very helpful, as well as cathartic for them.

2. Be there for the person
   A strong support system is essential for an individual to be able to face the illness. Understand the pain behind the person’s anger and frustration. Help the individual work through the pain associated with the loss of their health. Help the individual express their feelings and also ensure that the individual knows that no matter what happens, you will be there for the them.

3. Avoid Preaching
   The grieving individual is often not in the state of mind to listen to anything. Though giving advice to someone is easy, following the advice is not that simple. The affected individual is already dealing with having to upturn their lives, build a new one and re-adjust everything they’ve known about their bodies. So, it is therefore important to acknowledge the courage it takes to do so and the resilience of the individual. The advice we give them might not fit into their life and may only make them feel more frustrated, hence, staying away from advising the affected individual or their family members is important.

4. Encourage the individual to avail counselling if needed
   Caregiving is a task that can take an emotional toll on the caregiver as well.  In such cases family members too can benefit from availing the help of a mental health professional. This can prove beneficial to the individual as well as their family members deal with the grief and distress they are experiencing. Further it can be crucial in understanding how to make meaning out of the distress and build a new life. Telephone and email based counselling service is one such provision available for those who wish to seek help. The telephonic medium allows for individuals to be able to immediately access help whenever and from wherever they need it. Not only that, it is also more economically viable.
   iCALL is a psychosocial helpline which provides anonymous and confidential counselling service over telephone and email through a team of trained and professional counsellors.  This is a safe space for you to reach out and share your concerns without the fear of any judgements. You can contact iCALL on 022-25521111, between 8 AM to 10 PM, from Monday to Saturday, over the telephone and email at icall@tiss.edu.  Our counsellors will be happy to cater to your concerns in ten different languages: English, Hindi, Marathi, Gujarati, Bengali, Punjabi, Konkani, Malayalam, Tamil and Telugu.

References:

Cadman, D., Boyle, M., Szatmari, P., & Offord, D. R. (1987). Chronic illness, disability, and mental and social well-being: findings of the Ontario Child Health Study. Pediatrics, 79(5), 805-813.

Goldberg, D. (2010). The detection and treatment of depression in the physically ill. World Psychiatry, 9(1), 16-20

1. William Worden, P. D. A. (2008). Grief Counseling and Grief Therapy, Fourth Edition: A Handbook for the Mental Health Practitioner.

Katz, D. A., & McHorney, C. A. (2002). The relationship between insomnia and health-related quality of life in patients with chronic illness. Journal of Family Practice, 51(3), 229-236.

Patel, V., Chatterji, S., Chisholm, D., Ebrahim, S., Gopalakrishna, G., Mathers, C., … & Reddy, K. S. (2011). Chronic diseases and injuries in India. The Lancet, 377(9763), 413-428.

Moy, M. L., Reilly, J. J., Ries, A. L., Mosenifar, Z., Kaplan, R. M., Lew, R., & Garshick, E. (2009). Multivariate models of determinants of health-related quality of life in severe chronic obstructive pulmonary disease. Journal of rehabilitation research and development, 46(5), 643.

Winch, G. (n.d.). Emotional first aid: Practical strategies for treating failure, rejection, guilt, and other everyday psychological injuries.

What’s Your Grief – Helping You Cope With Grief Any Way We Can. (n.d.). Retrieved September 19, 2016, from http://www.whatsyourgrief.com/

World Health Organization (WHO), (1948). http://www.who.int/about/definition/en/print.html